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Friday, May 11, 2018

When Farheena entered my life on 11th May 1995, my joy knew no bounds. Farheena has ensured that I continue to enjoy her company even to this day. She inspires with her uncomplicated thinking and way of looking at things without being prejudiced or judgmental. Having a daughter born after a son completed me as a mother.

I love the way Farheena greets the day with her unique sentence, "Tomorrow has happened!" There are many things that only Farheena can say or do, especially the unconditional and limitless love she shares with people around her.

With her medals and certificate

Though life began with loads of challenges for Farheena, there is nothing that can stop her from being happy. Today, Farheena does not talk fluently, but she does communicate in her own way and style. She can see clearly. She walks with little help. Farheena manages her own life and keeps in touch with friends of her choice through internet. Facebook and recently WhatsApp are her favorites.

With one of her favorite blogger friend Janaki

With limited words she can pronounce or spell, she uses her creativity to convey messages to us. Her lack of complete vocabulary has not stopped her from communicating with people. She keeps trying until she is understood.

Sharing her friend's secret with her baby doll Annie

2015 marked a new Era of my life because this was the year when Farheena walked in with her first Salary she received for making paper bags in YST. She is involved in lot more activities now.

That was the biggest goal of my life achieved. People who do not understand the whole concept often ask me, “How much does she earn?” That is not important. What makes it important for me as a mother is to know that she is now capable of being engaged in fruitful and purposeful work throughout the day. Apart from her job at Fame Swalambhana , Farheena is busy on limeroad creating her scrapbook with styles of her choice. She has given me a few fashion tips and tries to correct me when she feels I am wearing inappropriate clothes for an occasion.

My inspiration in 2018 or any year

is my special needs daughter Farheena who has not allowed anyone to take her for granted. She knows how to protect herself and when to ask for help if someone is bothering her. She carries herself with dignity of a queen and is proud of her achievements. She has the ability to make people feel like somebody special. Moreover, unlike many people I know, she loves and respects herself.

15 years ago, I was consulting a lawyer regarding my legal rights. During the course of discussion, I mentioned that I am proud of my daughter. The lawyer then retorted saying, “Stop lying to yourself Farida. Come out of the delusion you are living in. No one can be proud of a special needs child. You can accept and love her but cannot be proud of her”. I was confused back then and walked away without answering her. I knew I felt pride in my heart when I think of my daughter but I was not sure.

Today, I can very confidently say that I am very proud of my daughter. She has taught me a very important lesson in my life that – it is not what you get in your life that matters, but what you do with what you have which makes the difference. I know she will continue to inspire me in the coming years as well.

I am very happy to share the story of my hope and happiness to people who may feel overwhelmed by the challenges in their lives. Hang-on and fight with all your might! You will succeed.

Wednesday, April 4, 2018

Sometimes we live in a well and lose our ability to imagine
anything beyond the walls of the well. If not exactly frogs in well, my two
children and I were almost going through that phase in our lives. Our two big
leaps happened when we shifted from the confined city life to a village and
then from the village to USA.

Rayyan my son was very much loved by my family, but that
also meant the precious baby was over protected. Farheena was my special needs
daughter, so in a way she ended up being overprotected as well. My house and my
family turned to be their first well and they could not see anything beyond it.

There came a time when I decided that my children need to
see the world beyond my own family. So, unwillingly, breaking many hearts, I
moved on to live independently with them to a village called Byndoor. Rayyan
now learned shopping for household groceries, cleaning, playing outdoor games,
go out trekking, swimming and many more life skills which he missed in
Bangalore.

Enjoying beach fun in Byndoor

Unfortunately, the rural surrounding hampered Farheena’s social
life, though she found some good friends out there. I thought we have jumped
out of the well, not realizing that we are just in another well. We lived in
our room of 7 by 9 feet and felt good about it.

Sometimes blessings come in disguise and I can say, so was
my cancer. Though a life threatening condition, breast cancer has been one of
the reasons for many of the positive breakthroughs in my life. My window to the
outer world opened up through my need to connect with other cancer survivors
for emotional support.Since I could not
find support group anywhere around me, I reached out further and further,
finally ending up with a support group in USA. Talking about my cancer
experience, the bond started to build up between me and other survivors,
especially between Paula Gerding.

With passing days, Paula became the loving Pee aunty to
Rayyan and Farheena with whom she would connect through webcam regularly.
Farheena, my special needs daughter fell madly in love with Paula and wanted to
meet her. This gave birth to our travel inspiration. Traveling to USA was
easier said than done.

Visa, travel expenses and many other things were supposed to
be taken care of. We were not one of those world traveler types. My children
had not even traveled outside our state. Yet we did not give up, neither did
Paula. One fine day, we just reached to the skies and traveled to USA.

The warm welcome we received at the Tampa Airport

It was
an out of the world experience for us. I know many people travel to USA from
India, but I am not sure how many of them get to live with the Americans like
we did, especially with a person like Paula.

If we were touring USA, we would never experience something like this.

From city to village life and now to USA, Rayyan was exposed to different environment which were worlds apart from each other.

Rayyan learning to take care garden.

What surprised me the most was the change I could see in
Farheena. She was laughing, playing, and communicating with almost everyone
around there. Her expressions changed. She wasn’t peeked into curiously by the
Americans, but instead she was called a pretty girl, appreciated, welcomed and
greeted with a ‘Hi’ even by people not known to us. She soon became the star of
our group.

Learning photography with Sandy

Farheena has mobility issues though she walks around. There
were many times when I had to stay back with her or ask Rayyan to stay with her
so that one of us could complete shopping or any other work. USA was much
friendly towards special needs of people. She could go to movies, parks,
resorts, shopping malls since she had enough support to give her access
everywhere. Ramps, wheelchairs, railings, toilets and other things made a huge
difference to her life.

Never seen her smile like this before....

More than that it was the people around who were open minded
towards special needs people that touched my heart. No one peered at her as
though she was some weird being. No one questioned what was wrong with her. She
was treated like any other person around, but with a bit more love and care. It
was amazing to see her waving to the people and greeting everyone with a big
smile.

The girl who was terrified of dogs, suddenly accepted them as her best friends. They would wake her up every morning and she for once did not grumble when getting out of her bed.

The Indian Saree was a craze among my American friends. This
made us to organize a Saree party. Friends from different states of USA
gathered in Florida for fun with Sarees.

They learned so much about India and
our culture by meeting us and living with us.

There were simple messages passed on. One of the issue with
Paula initially was why I was took the leftovers so seriously and packed them
into the refrigerator instead of disposing them. Slowly she learned to see my
point of view of how it finally makes a huge difference to our budget and also
to world food crisis. Sometimes I could just spread the table for four for a lunch
or dinner with only the leftovers which I had modified to suit our taste.

We discussed everything from arranged marriages to
religions, sexual preferences, parenting styles, corporal punishment and many
more. There were times when we would disagree and agree to allow the other to
disagree on the issue.

For a middle class family it was tough decision to travel to
USA and live with our American friends. We knew that the lifestyle, food,
culture and everything would be different, but we never realized that experiencing
something different and new would be so enriching and beautiful. We loved the new world we visited and wanted more of it.

When I came back to India, I was changed. So were my
children. It motivated me to take my career seriously and also take up
education and learn something new. Slowly in the last one decade, we worked and
carved a new life for ourselves.

After observing Farheena’s change in USA, I decided to give
her the second best option and slowly settled down in Bangalore. She started
enjoying her time - first in special school and then in vocational centre. She also
made friends here and learned to communicate with them through social media.

Rayyan made firm career choices and ended up doing what he
loves to do. It was a proud moment for all of us when his team was one of the
top 5 chosen for the XPrize.

As for me, I settled down with a Montessori and Daycarecentre of my own. It was a dream I always cherished. I am sure that my travel
and my experiences in USA had a great influence on my becoming financially
independent person. Initially there was a desire in me to change the world, but my travel inspired me to change myself. This eventually changed my world as well.

Though busy right at the moment, we have plans to travel and meet our friends in different parts of globe. We want to experience the world
not like tourists visiting the famous monuments and tourist spots but like
friends and visitors who would get a glimpse of different culture and lifestyle
from the close quarters. Our exploration would be of the real world and not just the famous tourists centers. We want to love the world as it is - different from our own world yet beautiful and lovable in its own way.

Saturday, February 24, 2018

Though money is not everything, cancer care or treatment does not come free. Financial burden adds to the suffering of many who are battling the illness. A single sitting of chemotherapy costs about INR 90,000, a full-fledged cancer treatments runs into lakhs of rupees. What makes the matters worse is availing any kind of treatment for the poor is a challenge. They either face shortage of quality care, or shortage of money or often are deprived from timely care.

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I was kind of surprised with an invite to attend an event at JW Marriot hotel to be a part of New India Movement.

It was an amazing gesture from Bangalore based entrepreneurial couple, who decided to donate 200 cr to the self-funded NGO "New India" to make cancer treatment cashless. It was wonderful to know that Vijay and Amrita Tata couple celebrated their daughter's birthday in this unique way. I can imagine how much Rs 200 crores donated for the underprivileged can help them survive and be with their loved ones.

The fund came in the form of 50 acres of land in Bangalore worth Rs. 100 crores to the trust and an additional Rs 100 crore to be used towards development of Super Specialty Cashless Cancer Care Hospital for poor people. Bollywood Actor Emraan Hashmi who had faced the brutality of cancer when it affected in son, launched the initiative. In his own words, inaugurating the NGO, Emraan Hashmi said, “I have very closely seen the pain which cancer patients and their family goes through.NEW INDIA’s initiative to create new hope for poor cancer patients is worth appreciating and I am glad that individuals like Mr Vijay Tata and Mrs Amrita Tata are coming forward to take this novel step.”

New India solemnly commits itself to the fight against cancer by ensuring to take strong steps in making sure that cancer treatment and care is available to all the needy and poor for free. Because with Cancer what kills faster is the cost associated to it. NEW INDIA already has earned itself a 50-acre land worth Rs. 100 crores that will be the foundation on which a cancer hospital for the underprivileged will be built.

It aims to cater women, children, critical illness and stop-rape initiative to bring justice to rape victims and help them resurrect their lives. As the first initiative by NEW INDIA, it has already pledged 50 acres of land worth Rs 100 crores in Attibele-Anekal Road, Bangaloreto the trust. Additional Rs 100 crores will be used towards construction of the super-specialty cancer care hospital. All underprivileged cancer patients fromacross India will be treated completely free of charge. This will be the first cashless hospital across India.

Hope more millionaires in India will take a hint from this couple and contribute to the society in the right way.

Tuesday, January 30, 2018

Back in 1996, when I was diagnosed with cancer, I had no
clue who I was pitched against in this battle. All I knew was that it involved
surgery, chemotherapy and radiation to fight cancer. I did not know much about the
technical terms I was coming across back then.

Later on, year after year of survival, I realized there are
lot more terms in breast cancer that I had no clue about when I was diagnosed
and went through the treatment. ER positive/negative, PR positive/negative or
triple negative were some terms which I had no clue about.

Later when I heard about BRCA1 and BRCA2 genes, I was in
denial that cancer can be genetic, since, if yes, then it meant I would have got
it from my mother. I did not want to feel that way. Though there were hints
with my sister, my mother and myself being diagnosed with breast cancer, I did
not want to accept the fact. But it lead me to read more in detail about inherited
mutations in BRCA1 and BRCA2 and how they increase the risk of breast and
ovarian cancers in women. It was new information for me to know that these genetic
mutations are associated with higher risks of many different cancers.
Hereditary breast cancer was an unacceptable but genuine bitter pill for me to
swallow.

Finally, I put up enough courage to go ahead with the
mutation testing. The reports came back stating that I was BRCA2 positive.
Since breast cancers associated with BRCA1 and BRCA2 tend to develop at younger
ages than the nonhereditary types, it explained my own diagnosis at the age of
29 and my sister’s diagnosis at the age of 30.

With more research
and understanding of cancer, I realized the need of technology in healthcare to
fight cancer the right way. Back in 1996, I thought total radical mastectomy was
the best way for me to fight cancer, even though my doctor gave me an option of
breast conservation. Now I realize that at the age of 29, I need not have surrendered
my whole breast. Though I have learned to live with prosthesis, sometimes I do
miss the symmetry of my body.

There are lot of organizations today, like Tempus, who with
their team of innovators are obsessed with developing breakthroughs in how we
tackle diseases the right way. This will highly customize the treatment that
the patients receive.

One of the most prominent question in most of the people
going through cancer treatment is regarding the outcome of the treatment. Usually we do not get
definite answers to our questions. Fortunately, today the advanced image recognition
algorithms extract key image characteristics from radiology and pathology images
to create imaging data sets to better measure outcomes and to inform predictions.
Though life is quite unpredictable, it is nice to know where we stand in this
battle for our life.

I am aware that today after being a cancer survivor for 22
years, that data analyses plays an important role in the outcome of treatment
results. I realize that something like sequencing services and analyses of
somatic and germline molecular data along with therapeutic data will empower
those dedicated physicians to make better data-driven decisions to give those
fighting cancer a better chance of living quality life for a longer period of
time. Technology will give us the edge over cancer. Innovative and breakthrough
technics like Bioinformatics system delivers accurate variant cells of genomic
and transcriptomic data. Further, classification platform combines complex
algorithms with a robust set of curated databases to enable experts to make
fast and thorough decisions, all in the context of a patient's case. This new approach to next-generation sequencing
aided by modern technology will give doctors today an access to a
variety of sequencing capabilities, all with full transcriptome and
tumor/normal match which will customize treatment for a specific patient and
target the cancer cells more accurately.

After 22 years of
survival, though my risk of recurrence has come down tremendously, it still
gives me more courage and hope that with present developments in cancer treatment, I
can fight it off if it ever makes a come back again. Thanks to all the people
who are trying to make cancer treatment more successful.

I have lost my
mother and my sister to breast cancer. I hope technology and dedicated research to fight cancer will prevent others from losing their loved ones to this
disease.